Thursday, March 5, 2015

Hidden Disability logo

The best I can do for everyone is to provide the file be email, if you write to You will have to find a way to get the cards printed, either locally near you or online. Or, you can print at hone if you have the right equipment.
Me here: I would love to have this as a pin or even a T-shirt, if someone wants to set it up via Cafe Press or something similar.

Wednesday, March 4, 2015

Dr. Oz will be talking about SEID this Thursday

Dr. Oz will be talking about SEID this Thursday. Check your local listings for times in your area:

A Biological Basis for Chronic-Fatigue Syndrome - The Atlantic


 In a study published last week in the journal Science Advances, researchers found that people with chronic-fatigue syndrome showed measurable differences in their immune systems, a discovery that may enable doctors to diagnose the disease more quickly down the road—and one that sheds more light on its still-mysterious biological origins.

"It's been a highly stigmatized disorder. There's been many naysayers that don't even believe it's a biological disorder," said Mady Hornig, the lead researcher and a professor of epidemiology at Columbia University's Mailman School of Public Health.

... The paper is the second in recent months to describe physical differences linked to the disease: In October, researchers at Stanford University observed differences in the white matter of the brains of patients with chronic-fatigue syndrome, a finding that Drew Foster described in The Atlantic as "a social-legitimacy jackpot."

...  the National Institutes of Health have budgeted $5 million for research into chronic-fatigue syndrome for 2015, one of the smallest amounts on its itemized list of projected spending. (For context, headaches were allotted $24 million, and multiple sclerosis $103 million.) 


Happy Anniversary to me

27 years ago today, I got a diagnosis from an Ivy League doctor who assured me that "it has a name" and that he and other great minds were researching this disease.  I expected a treatment to be available in 5 years and a cure in 10.

So, here we are nearly 3 decades later, and finally there's something that looks like forward progress, including the information that the early years of the disease look very different from the later years. Any hope for an "easy cure" is gone – I've been sick a lot longer than the 5-year cutoff that researchers have been finding.  At this point, all I can hope for is that a new name finally gives it enough credibility that I can qualify for some sort of assistance, primarily volunteer drivers and cleaners who are trained to work with the disabled and not make things worse by creating heavy boxes "for you to put away!" that are placed in front of the doors and drawers I would have to open in order to put those things away.
Had Dr. Israel told me that I'd be waiting this long and still no treatment available other than palliative pain pills, I would not have been so excited when I called my uncle's birthday party that afternoon to announce that I finally had a diagnosis.  I know now that it's just another of those innumerable frustrating times where something desirable is dangled in front of me and then yanked away – a sadistic game to play.  It wasn't really good news that it had a name ... just the start of a long painful unproductive experience.

Friday, February 27, 2015

Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is Biological

The study supports the idea that ME/CFS may reflect an infectious "hit-and-run" event. Patients often report getting sick, sometimes from something as common as infectious mononucleosis (Epstein-Barr virus), and never fully recover. The new research suggests that these infections throw a wrench in the immune system's ability to quiet itself after the acute infection, to return to a homeostatic balance; the immune response becomes like a car stuck in high gear. "It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop," says Dr. Hornig. "Early diagnosis may provide unique opportunities for treatment that likely differ from those that would be appropriate in later phases of the illness."

Chronic Fatigue Syndrome Study Findings May Lead to Diagnostic Tool


The immune systems of people with chronic fatigue syndrome differ from those of healthy people, and patients with recent diagnoses can be distinguished from those who have had the condition for longer, researchers reported on Friday.

The findings do not have immediate clinical applications for patients, experts said. But the biomarkers discovered by the scientists eventually may form the basis of the first diagnostic test for the illness.

Distinct plasma immune signatures in ME/CFS

No, it's NOT all in our heads.....
distinct alterations in plasma immune signatures early in the course of ME/CFS (n = 52) relative to healthy controls (n = 348) that are not present in subjects with longer duration of illness (n = 246). Analyses based on disease duration revealed that early ME/CFS cases had a prominent activation of both pro- and anti-inflammatory cytokines as well as dissociation of intercytokine regulatory networks. We found a stronger correlation of cytokine alterations with illness duration than with measures of illness severity, suggesting that the immunopathology of ME/CFS is not static.

Thursday, February 26, 2015

ME/CFS is indeed an inflammatory disease

The disease process that most resembled CFS was Systemic Inflammatory
Response Syndrome, also known as SIRS; this correlation had a staggering 100%
resemblance. From the Lipkin/Hornig data and our data the picture that
clearly emerges is that ME/CFS is indeed an inflammatory disease."
-- Dr Montoya (of Stanford) on the CDC call at 36:40

Slightly Alive: The IOM Report on ME/CFS (SEID)

Mary Schweitzer's review of the IOM report:
Slightly Alive: The IOM Report on ME/CFS (SEID)
"in part because of a continuing prejudice in the medical profession against the possibility that a person can have a chronic viral infection (except for AIDS patients), all of the literature on pathogens (except EBV as a possible trigger) and most of the literature on immune system dysfunction was ignored.  Did not appear in the report. ... this disease was originally named atypical polio" (another enterovirus that causes lifelong problems).
Mary notes "the incidence of secondary depression is similar to that in MS patients" -- you'll find secondary depression (depression as a result of being ill) in any serious disease, but no one would ever suggest that depression is the cause of cancer or stroke or emphysema ... only with CFS. 
There are a number of symptoms that appear in CFS that don't appear in depression.  The two are easy to differentiate if you know what you're looking for.  Unfortunately, too many people (including doctors) hear "fatigue" and leap straight to depression without considering that fever, rash, swollen glands, etc. aren't symptoms associated with depression, but are symptoms of CFS.

Wednesday, February 25, 2015

New chronic fatigue syndrome report doesn’t help us - Washington Post

Three decades ago, the U.S. government burdened a group of seriously ill patients with a trivializing name — "chronic fatigue syndrome" — and a broad set of criteria that did nothing to distinguish true sufferers of this debilitating disease. Now, thegovernment is trying to do it again, under the guise of helping us, with a new report from the Institute of Medicine, the health arm of the National Academy of Sciences.

Chronic Fatigue Syndrome Needs Effective Treatments -


A Disease Doctors Refuse to See

Chronic Fatigue Syndrome Needs Effective Treatments


TOO often, doctors don't understand chronic fatigue syndrome. They don't know how to diagnose it, and they frequently even believe that patients with the disease are just whining or suffering from psychological problems. This needs to change.

That was the message from the Institute of Medicine's recent report on the illness...

I hope, and believe, that this report will help some patients get diagnoses more quickly and accurately. But to get anywhere close to the care that patients so desperately need, no report is enough. It will require objective tests and effective treatments. For that, federal agencies will have to start making an investment in this disease that's proportional to the devastation it causes.

Tuesday, February 24, 2015

20-page SEID for Physicians Report

Since doctors won't read a 300-page report, here's the short version -

Full link:

New Name For Chronic Fatigue Syndrome? The Community Weighs In

Not surprisingly, myalgic encephalomyelitis was preferred over CFS.
SEID, eh....